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For the past year, when I’ve gone to see my Pain Management Physician, I’ve been told at each visit that my medication has to be decreased. I didn’t say too much the first time they did this, but I did speak up on my recent visits. The response I got from the M.D. and the N.P. was the same. They both said, “Due to the CDC Guidelines, we have to start cutting all patients back on their medication.” I asked them why they were following guidelines that were written for Primary Care Physicians and are voluntary? He then explained to my husband and I that they were afraid of losing their license, home, employment, income, and that they could face jail time up to a life sentence if anything went wrong with one of their patients. He continued by saying, the DEA is “Watching them”, and they could get into a lot of trouble if one of their patients misused or abused their medication, then overdosed and died. He also told us the CDC guidelines were addressing the “Opioid Epidemic,” and it was recommended that doctors reduce the amount of medication their patients are taking. Apparently, since the guidelines were made public, the DEA has been watching doctors like a hawk to make sure they follow the guidelines and will find anything they can to get a doctor in trouble. This means anywhere from checking the amount of prescriptions and the number of pills in each prescription they write, to their documentation on a patients chart.

I understand that we have a problem with addiction, drug use, abuse, misuse, overdose, and death from overdose in the US, but I think most of this comes from the vast availability of illegal drugs in our country. What I mean by illegal drugs is, anything which is not prescribed by a doctor. It is fairly easy to get anything you want on the streets in our country, and this is because the DEA and our government has failed at keeping them off the streets. The “War On Drugs.” has failed miserably when it comes to illegal drugs. An example of this is the illegal Opioid Fentanyl, that was introduced to the streets not long ago. This illegal drug has been mixed with other drugs and made into a pill form as well as being put into the heroin supplies on the street. This is a very potent, powerful drug that has killed a lot of people recently because they are unaware of it being in their “supply” that they buy on the street or from their dealer. There is no reason to have a drug like this or any kind of drug being bought or sold on our streets. Apparently the DEA cannot control situations like this so they go after doctors because it is an easier target for them.

Since many Chronic Pain Patients continue to have their medications reduced and/or taken away completely, this “Opioid Epidemic” as it is called, will continue to get worse. I fear that many patients with chronic pain will resort to the streets to find pain relief and will overdose and die, or they will commit suicide to relieve their pain and daily suffering. Those who make the decision to take their life, depending upon the method they use, could be counted as one of the CDC’s statistics. Speaking of statistics, there are rumors going around on social media saying the way the CDC did their investigation was bogus. Apparently they counted the death of a person from overdose twice if they had any prescription pain medication, as well as illegal drugs in their system. There are also deaths from heroin that were counted as opioid medication deaths because the body quickly metabolizes heroin into morphine. So I guess the question on the minds of so many people, especially those who suffer with chronic pain, is how do they know if it was actually a legitimate “Opioid Medication Overdose”, or was it really an illegal substance that metabolized into an opioid? Somehow I find these rumors to be legitimate, and wonder how many deaths were counted wrong just to make the CDC’s recommendations valid. Nevertheless, I do understand that there is a problem going on, but I think the CDC blew this all out of proportion. I think the first thing they should have addressed was the addiction to illegal drugs. This by far is more pronounced than the addiction to opioid medications. There have been various studies done stating that less than 1-3%, (depending upon the study), of people treated with opioid medications become addicted to them. And most of these opioid medication addictions were due to the person misusing or abusing their medication.

Before I close my ranting thoughts, I have included a letter that is going around the internet. A Registered Pharmacist wrote a letter to the CDC in reference to his Chronic Pain Conditions. The letter attached below is from Dr. Houry M.D. an ER doctor that works for the CDC at the National Center for Injury Prevention and Control. If you have read my ranting thoughts, please go one step further and read the letter from her. This patient highlighted areas in the letter that contradict what most doctors have been telling their patients in reference to the CDC Guidelines. It makes one wonder just who should we believe?

*If you are a Chronic Pain Patient on Opioid medication to control your pain conditions, and you have had problems since the “Guidelines” came out, please write to the CDC and other government agencies and/or officials and tell them what its like to live with your daily pain. It can be a brief letter as long as you get your point across to them. One thing to remember is to be as polite as you can. We will not get through to them if we write a letter when we are angry. I know this can and will be a chore for a lot of us to do, but please know that I understand how one feels when you suffer with unbearable, debilitating daily pain.

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So, due to the CDC guidelines, which states a patient should not be on Benzodiazepines while taking Opioids, my Pain Management Doctor decided to change my low dose medication that I taking and was working for muscle spasms. I was on Diazepam (Valium) 5mg (1) tablet twice daily and was changed to Zanaflex (Tizanidine) 4mg (1) tablet three daily. I was tapered off the Diazepam and started on the Tizanidine last week. I took it two days, (6.5 doses) of this new medication and had terrible side effects from it! This was an experience I will never forget.

The first couple of doses I didn’t have any problems. But, by the time I was due for the third dose on the first day, I started feeling as if the muscle spasms in my neck and shoulders were getting worse. I just thought maybe the Tizanidine needed a little more time to get into my system and “start working”. On the morning of the second day, the spasms were actually causing increased pain, but I still thought that the medication needed more time to get into my system to work. I thought the increased spasms were due to not taking the Diazepam any longer. By the late afternoon on the second day, I was in extreme pain from the spasms, very sleepy, started having blurry vision, was lightheaded and dizzy, started having nausea, had a terrible headache and started having some confusion and concentration issues. I had my husband gently touch my shoulder muscles and he stated the spasms felt like “bricks”. I had a terrible night and could not sleep. I was up all night long because of how bad I was feeling. Even though the medication made me sleepy, the pain kept me awake!

I only took half of the dose on the third morning because by now I was thinking maybe the 4mg dose was too much. A few hours after the morning dose of Tizanidine, the problems I was having the night before escalated to a point that I couldn’t stand to have anyone or anything touch me. My skin was so sensitive to touch, the spasms were worse, blurry vision was worse, when I tried to turn my head I got so lightheaded I thought I was going to pass out while sitting down. I swear the pain was so bad, it was worse than giving birth! Even though my vision was blurry, my head hurt and the confusion and concentration had gotten worse, I told myself that there was something wrong, seriously wrong… I shouldn’t be feeling like this! I looked up the side effects of Tizanadine and found out that most of the things I was feeling were on the side effect list. I had my husband call the pharmacy, since it was close to the weekend and my doctors office was already closed. He was told I should immediately stop taking the medication. We would have called the “On Call” Doctor at the clinic, but we have had bad experiences with doctors and nurses NOT getting back to us until the next week, or when they felt like they had the time… and I was not going to continue this medication until they found the time to call me back!

The last dose of Tizanidine I took was mid-Friday morning, and it was only half a dose. It took the next three days for this medication to completely get out of my system. It is now Monday, March 28, 2016, and I finally feel like my normal self. I’m not having anymore symptoms like I was having before… thank goodness! Now I’m just having my normal pain issues. I never want to go through something like this again. It was scary, painful and confusing all at the same time.

What I don’t understand is, why would the CDC want pain patients to get off medications and cut down the doses of medications when they are working for them? If a person is taking their medications CORRECTLY and NOT abusing or misusing them, they should be able to stay on or get what helps them. I understand that we have a problem with addiction in the US, but, our government and their corrupt agencies are making hard for legitimate chronic pain patients! A doctor can tell if we are using our medication correctly by looking at the Prescription Drug Database and urine drug testing that they do. And speaking of doctors, there are not many of them that are out there standing up for us chronic pain patients. There are a few, but not many!

Very soon, if it’s not happening already, pain patients are going to go looking to the streets for pain relief. This is only going to cause the addiction and death rate to go up! If the CDC thinks the rates are bad now, give it a few months… it will certainly get worse! Most legitimate pain patients know nothing about using street drugs (such as myself), and they will be the one’s that will get something off the street that is not pure, and not know the first thing about how they should to use it. These patients are going to and will die! Then you have other pain patients that will take another way out. They will commit suicide. It has already happened in this State, and probably in many other States too. Either way, the addiction, overdose, and suicide rates will go up and I personally don’t think our government gives a shit about it!

Chronic pain patients deserve to have at least somewhat of a normal life. We deserve to be able to get out of the house and visit family and friends. We deserve to go shopping. We deserve to have a relationship with our spouse. We deserve to see our kids and grandchildren grow up. We deserve to be able to go out to eat or to a movie. WE DESERVE TO HAVE OUR PAIN BE ADEQUATELY TREATED! WE DESERVE TO BE TREATED WITH RESPECT, DIGNITY, AND AS A HUMAN BEING! We deserve the things that “normal” people take for granted! But until this happens, and we get proper treatment, I will go on to fight for my rights, and the rights of others that suffer with Chronic Pain…!

~~~~~~~~~
Karla Rabel,
~Disabled Nurse, Self Advocate, Advocate for Others Living With
Chronic Pain, Owner/Admin at Living With Daily Pain Facebook
Group and Fan Page, and Chronic Pain Patient Fighting For My
Rights and The Rights of Others~

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Chronic pain topics trending on social media have increased with the release of the National Pain Strategy (NPS) and the CDC Guidelines for Prescribing Opioids. Having submitted comments on both drafts, I felt it was time to express my personal opinions. There are vast differences between the two, even though the “CDC Guidelines” are specifically mentioned at the conclusion of the NPS report.

Overall, the checklist is not difficult to understand and physicians will be more likely to use it. Where I do not comment, assume it to mean I don’t see any reason to mention it.

Good Stuff:

“For primary care providers treating adults.” – Primary care physicians need guidelines by government agencies so they do not fear retaliation by the DEA. Not all patients living with persistent pain require supervision by a pain specialist; in fact, there aren’t enough pain physicians to meet the needs of over 100 million Americans living with chronic pain.

“Known risk factors” – Important assessment.

“Prescription drug monitoring program” (eleven states do not have a PDMP) – You can read what I think about medication safety on my website. PDMPs are good for identifying signs of drug diversion or abuse, which protects responsible people, but will physicians who treat patients with conditions that cause chronic pain, i.e., pain physicians or rheumatologists be singled out? And, how will this affect patient care in states without a PDMP?

“Behavioral treatment” – This piece is often difficult for physicians to discuss with their patient’s, and vice versa. However, there is evidence that shows our behavioral response to pain makes a difference in our ability to cope and our pain intensity.

“Schedule initial reassessment within 1– 4 weeks.” – This should be done any time a new medication is started, including non-opioids that affect the central nervous system.

“Assessing pain and function using PEG scale” – This one gets a mixed review. Relieving pain, decreasing the intensity to improve quality of life is the reason we seek pain care, though quality of life should be assessed according to what that means for individual patients. For instance, a diseased spine or joint is not going to function better despite pain relief. Improving endurance cannot be achieved without therapies that help, therapies that are often capped by Medicare and are not based on patient outcome.

Bad Stuff

“Benefits of long-term opioid therapy for chronic pain not well supported by evidence.” – Describe evidence? Anecdotal reports from physicians who specialize in pain medicine are evidence (but they were not represented in the “Core Group” of experts). If they are referring to research, there is no evidence to suggest opioids don’t work for long-term pain care.

“Schedule reassessment at regular intervals (≤ 3 months)” – This guideline is not appropriate for patients who do not need advanced pain care. Patients requiring smaller doses of opioids for their pain may not have the ability to see the doctor this frequently for a variety of reasons. To put an absolute time interval (without cause) puts an unnecessary burden on the physician, patient, and insurance, including Medicare.

“Urine drug screens.” I am not against them when there are signs of abuse. However, using drug screens to assess risk without probable cause is offensive for several reasons: they are accusatory (guiltily until proven innocent), they are humiliating, they are not consistently accurate, and they are not always covered by insurance, which is discriminatory against folks who can’t pay or benefits will only cover tests that can give false results.

The Ugly

“NON-OPIOID THERAPIES Use alone or combined with opioids, as indicated:” – Suggesting long-term use of NSAIDs is not safe, and there is evidence to suggest this. Antidepressants are not without consequences; they have many drug-to-drug interactions and can lead to suicidal thoughts, they are not always a safer choice. Anticonvulsants are also abused because of euphoric effects and can have serious side effects like antidepressants. Non-opioid treatments should be considered, but the effects of alternate drugs should not be undermined.

“Calculate opioid dosage morphine milligram equivalent (MME).” Every patient is different. It is common sense to taper any drug or treatment to effect, but this particular issue could put a prescribing physician at risk of litigation. (See Dr. Fudin’s opinions.)

There are many things I agree with, some that I can tolerate, and others that I felt needed attention. The NPS did have representation by advocates during its draft, and we have all been waiting for it to be released. And, so it has been. You can see and overview and download the National Pain Strategy here.

“The Strategy provides opportunities for reducing the need for and over-reliance on prescription opioid medications;” this statement disturbs me. I believe the only way we can reduce the need for pain relief is to find a cure for scleroderma, complex regional pain syndrome, the effects of aging on the body, arthritis, fibromyalgia, EDS, myofascial pain syndrome, the centralization of pain, etc. Relieving pain is instinctive to all animals, including humans.

Not including all the stakeholders in the drafting of the CDC guidelines has many advocates and advocacy groups incensed, and rightly so. Public notice of the guidelines was made public for only 3 days. Only after being caught, did they allow our voice. But, despite pleas made by people far better equipped and knowledgeable (and unlike me, able to retain what they read), the CDC published them anyway. The total disregard for our government process – by, with, and for the people – is deplorable.

The CDC guidelines could have been done much better and would have been better received if our voices had been heard. And, it bothers me that the NPS overview ends with this statement, The goals of the National Pain Strategy can be achieved through a broad effort in which better pain care is provided, along with safer prescribing practices, such as those recommended in the recently released CDC Guideline for Prescribing Opioids for Chronic Pain. I doubt many of those who helped draft the NPS were aware of these guidelines being drafted when they participated in the drafting of the NPS. Some of those same people are among those who tried to hold the CDC accountable for their lack of transparency. The CDC Opioid Prescribing Guidelines are not all bad, but they are written with a discriminatory tone, which is counter-productive to the Institute of Medicine’s report, Relieving Pain in America, available from my website here.

To me, it is more of the same and that’s really is a shame. A great opportunity has been squandered by lack of corroboration, something I value.

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste’s blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All answers and blogs are based on the author’s opinions and writing and are not meant to replace medical advice.

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Hope all of you are doing well and having a low pain day today. I wanted to write you all a note to let you know that I am no longer working with Dr. Patty on her website or blogs, (Dr. Patty’s Chronic-Intractable Pain and You Sites Inc. [CIPAY]). Things were getting a little overwhelming, confusing and stressful there, so I decided to resign. It was for the best as my stress level has gone down tremendously!

I also wanted to let all of you know that a very good friend of mine, Susie McKee, and I have started a new Facebook Group. It is called “Living With Daily Pain”. We welcome you to join if you would like to. Our Facebook group is a closed group.

We Advocate and Support all of our members who are living with daily pain, as well as their caregivers. We welcome discussions about different pain conditions and we have full articles for you to read that our members and staff found interesting and informative. We welcome our members to post articles, discussions, or other groups and websites that they think other members may find interesting and last but not least, we love the pictures and quotes that our members post! 🙂

We hope to start our own website by the end of the year, or sooner if we can. We will make sure all of our members know and we post it in our blogs.